Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.



She also limited comments on that tweet to people she follows. She knows that if she didn't, she would get comments explaining how we already had many RCTs in ME/CFS that showed it doesn't lead to recovery.
 
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It could be that some long covid patients will benefit from GET but it seems unlikely that it will be the subset with an illness resembling ME/CFS which is what Paul Garner seems to have had (according to himself).

If GET is to be tested in LC, the people involved need to have a good understanding of the history of GET in ME/CFS so that mistakes aren't repeated. Trisha Greenhalg so far has come across as not the right person for this (according to herself, she doesn't know much about ME/CFS and thinks PACE is good science).
 
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MSEsperanza said:
Ask some experts in Norway?

Expertise in doing a feasbility study an RCT on Music Threapy could also help?
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Hahahah!

Well they did the right thing in Norway now, and understood an RCT is impossible, and made a rigged stepped wedge design study with a 6 month follow up and no objective endpoints. What can go wrong when the course holder has a gigantic economical conflict of interest, participants are being hand picked by her, and while supressing their experience of symptoms are going to report their functioning level in subjective questionnaires. Does not sound rigged at all does it?! Oh and by the way - state funded, and ethically approved as good science by the regional ethics commitee! Welcome to the upside down world of good science, where the best scientists manufacture results for an easy payday!
 
It's good to see that all that money spent in the 50's in researching mind control wasn't wasted. Remind me. What was the early career of one of the founders of NLP.

If you come across a Manchurian candidate, let us know.
 
MSEsperanza said:
Ask some Norwegian specialists?
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Isn't that part of the mandate for Recovery Norway, to help research such conditions? I don't feel like reading their webpage to find out.

Marky said:
Hahahah!

Well they did the right thing in Norway now, and understood an RCT is impossible, and made a rigged stepped wedge design study with a 6 month follow up and no objective endpoints. What can go wrong when the course holder has a gigantic economical conflict of interest, participants are being hand picked by her, and while supressing their experience of symptoms are going to report their functioning level in subjective questionnaires. Does not sound rigged at all does it?! Oh and by the way - state funded, and ethically approved as good science by the regional ethics commitee! Welcome to the upside down world of good science, where the best scientists manufacture results for an easy payday!
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You forgot the patients has to be newly diagnosed so they don't identify too much with the illness.
 
Apparently Paul Garner's sister has ME. I wonder how she feels about his claim that you can recover if you just apply yourself and think happy thoughts?

With Trisha Greenhalgh clearly endorsing this nonsense, the irony is that the Lightning Process might be included as a recommended treatment in the Long Covid NICE guideline yet explicitly ruled out in the ME/CFS guideline.
 
Sarah94 said:
I'm really gutted, this is such a massive blow.
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I'm not so sure. These people were never going to be a force for progress.

I think maybe this time Garner and Greenhalgh have said so many ill-considered things that the absurdity of it all will emerge. I certainly think that there is going to be a lot of dollies thrown out of the Long Covid pram over this. I am still thinking about doing a reply but have some other things I need to do today first.
 
Jonathan Edwards said:
I was just thinking that what Garner had been doing right up t the time he had some tablets handed down from Norway was pacing according to the advice of PWME.

So should he not use the n=1 to argue that pacing made him better?
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Exactly the point made here:

https://blogs.bmj.com/bmj/2021/01/25/paul-garner-on-his-recovery-from-long-covid/#comment-5241787266

InfiniteRubix said:
Dear Professor Garner,


It is indeed joyous news that you are on the mend. I wish you and all longhaulers well.


There are two very important caveats to be made to avoid harm to others, all factors detailed within the recent draft NICE ME/CFS guideline and/or reviewed by the committee. This includes sufficient evidence of harm to result in withdrawal of both exercise therapy and cognitive approaches to "encouraging" activity. Similar warnings have been put in place for post-covid patients by NICE.


The literature does suggest that early and sustained rest, when initial post viral fatigue strikes, results in higher probability of remission. It does sound as if you benefited from this good advice, which is as good as it gets in terms of evidence based counsel. Conversely, empirical probabilities of remission do collapse as time goes on. It is critical to note that patients in recent decades have rarely benefitted from the advice that you benefited from. There are repeated indications in the literature that patients instead normally encounter entirely the opposite advice to that which you received, within a contra scientific, long normalised, medical narrative.


It is also possible that you do not/would not have met the objective and required criteria of ME/CFS' cardinal symptom, Post Exertional Malaise. This is either because the advice to rest mitigated the progression of post viral complication or because you would never have developed ME/CFS itself. Objectively measuring Post Exertional Malaise in ME/CFS (using a two day cardio pulmonary exercise test in controlled research conditions) captures a reduction of anaerobic threshold, essentially a reduction in fitness that cannot be psychologically induced, either way, and which does not reflect your experience. Such PEM, whether CPET induced or not, is also associated with other adverse findings in the literature, from blood pathogen spikes and lactate accumulation across the body and brain, to peculiar glycolysis abnormalities, which all contextualise such CPET findings. Specifically, this is the quantified adverse reaction to exertion that you are not experiencing. Put otherwise, a person without ME/CFS will not respond physiologically in these negative ways to exercise.


While the science is incomplete, and wildly underfunded, the repeated corroboration of related findings does lead to a consistent menu of questions and research avenues. Which are apparently not compatible with your account being one of ME/CFS.


It is important to place perceived recovery stories in conservative contexts - a consideration that is rarely the case, particularly in the media. Moreover, the literature documenting medical attitudes to and knowledge of ME/CFS essentially codifies a narrative diet of misinformation and gaslighting, which runs entirely contrary to the science known outwith medical norms. Not contextualizing your story fully risks fuelling the harm done to patients yet further. Which I am sure is not your intention, but is habitually the case in the medical profession, even when good will exists.


With best wishes for your ongoing good health,


Dr. Richard Ramyar.
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